PCOS

[LookingforAnswers15]

Hi all,

I have a question regarding ovarian cysts. I saw a gynecologist today and she found some. I knew I have had one for some time but I was told that it was a water cyst that comes and goes and nothing I needed to worry about. Although no one has told me that I have PCOS, if I am not mistaken,  having ovarian cysts is PCOS. At some point, I was recommended taking birth control pills, which I took but I do not think they helped. After I was diagnosed with celiac, I stopped taking birth control.

So today, the doctor stated that ovarian cysts, especially the one that I have had for some time, can mess up my ovarian wall (or something like that) and that I should be on a hormonal therapy to try to get rid of them. However, she was not sure what to prescribe me since she did not know which pills contain gluten. She also told me to look at birth control pills. I went to the pharmacy and they found one kind of hormonal pills that has corn starch, which I am also a bit hesitant to take since I might be reacting to corn. I called the other hospital's lab and they promised me to have my test results by the end of this week, so I hope they tested me for corn.

My questions are:

1) If you are a celiac and need to take medication/hormonal therapy, which medicine were you prescribed (I am in Europe so I am hoping that even medicine is called differently, I can find something similar to it), and

2) which birth control pills do you use?

I did not expect her to find more than one and to be this concerned. Another thing to worry about... 

 

 

[cyclinglady]

What about topical (cream or patches)?  I have used both for hormone replacement therapy.  Are there compounding pharmacies where you live?  They can make the topical or a custom oral to help you avoid corn or gluten.   

I do not know if these are effective for PCOS.  You would have to do the research, but I do not see why not.  

[LookingforAnswers15]

Hi Cyclinglady,

good idea. I will definitely look into it but I do not think it will be possible since I have never heard of compounding pharmacies here. I have to figure out something. I will definitely ask. I really need some good news. I just feel it is one thing after another and of course I need to keep fighting and figure this out. Even this doctor today told me I should not be using forum and internet in general to try to figure things out. Thanks to this forum, I figured out about so many things that no doctor has mentioned to me. 

None of us imagined having to deal with celiac and other issues. I am really tired of dealing with all of this. While my friends are planning their weddings and having kids, I am hoping not to be diagnosed with other AIs. I am genuinely happy for them and take time to pick perfect presents for them but later I wonder if I will ever get to experience any of this. This has been on my mind even more after this appointment today and the only thing that I can even focus on (if I have energy and feel somewhat ok) is trying to figure out what can help me feel better. I really think that only people on this forum understand what I am going through. 

[LookingforAnswers15]

Has anyone used Chinese medicine? I came across "sairei-to" and it seems to be helpful with autoimmune issues in general. However, I really do not know anything about Chinese herbs/medicine so I wonder if it is really helpful. If so, is it possible to order online? Thanks

[bartfull]

Not familiar with that but I know there have been studies claiming that oolong tea (not black tea and not green tea) can help to calm the autoimmune response. There is one study from NIH that I could barely understand (Google "oolong tea suppress immune response"), but this link is much easier to understand: Open Original Shared Link

[Galixie]

PCOS is a diagnosis of exclusion which means that you need further tests before it can be considered PCOS. Just having cysts on your ovaries doesn't automatically mean it is PCOS. In true PCOS there is also hormonal imbalance which is measured through blood tests. Finding out which hormones are out of balance is essential to figure out what the correct treatment is. Treatment is also often based on whether or not you are currently trying to conceive. If you are not trying to conceive, most doctors will advise taking some kind of birth control pill which can mask symptoms but not actually treat the problem. For those trying to conceive, sometimes doctors will prescribe the diabetes medicine Metformin. The science is a bit murky, but it seems to help some PCOS patients. (If you take Metformin, be aware that it can lower your vitamin B12 levels.)

If the only test you've had done was an ultrasound, you should ask about the related blood tests to confirm the diagnosis. You should probably be referred to an Endocrinologist for those additional tests.

[LookingforAnswers15]

Thanks Galixie. I have to go back after my next period for another ultrasound and I think she will decide then what we need to do next. You are completely right. If there is a chance that I have some hormonal imbalance, I should know which hormones are out of balance instead of just putting me on some hormonal therapy without any prior tests.  Thanks again.